As 2012 turned to 2013, I re-evaluated what goals i’d hit on in 2012, and which I had yet to accomplish. It’s a constant process, and it’s stellar to see it unfold. However, it’s true that I’ve never been about the new-year’s aspect of new years resolutions, and the reality is, I never hit up any goals for 2013.
So, instead of the typical new year benchmark . . . I’m using my birthday!
Goals for my twenty-second year:
Get healthy. [It's vague, it encompasses a lot of things, but is it ever relevant right now.]
Walk a 10K race. [Last year, wouldn't have been a big thing. This year, after the asthma shenanigans and the anemia shenanigans, I'm starting from zero. And that's scary--however, if it doesn't scare you, it doesn't change you.]
Active choices: Make them.
Visit new places near and far.
Create more. [Writing, music, video: it all counts.]
Journal (at least) weekly.
Be more mindful–focus on the present.
Abandon apathy. [Special relevance in regard to asthma/sinus care, but also everything].
Learn more about learning more.
Trust the process.
Continue to recognize the Good Things.
i’m one year older now since the last time i saw you / in case you wanna know, i’m about to say what i’m up to […] / some peace of mind is what i want, but that will be the day.
[…] searching for the energy and the time to make a change / to make a change in my life / instead of watching it pass by / get something done while i’m alive.
i’m twenty two / don’t know what i’m supposed to do / or how to be / to get some more out of me. […]
afraid that i will be weak forever / i can’t stay in this shape any longer […] / i’ve been going with the flow for too long now / this must end / running ’round in circles / i’ve been so far from myself / i try to activate myself the best i can / so boredom won’t catch up with me / i got my daily plan.
My friend Mike started a thing called “Mirror Mantras”, where he posts a positive or motivating phrase on his bathroom mirror to keep him inspired throughout the week. Here’s mine for the week–my last-ever mantra as a twenty-one year-old!
Ever presenting much appreciated and creative influence into my life (and I am sure those of others!), Jay mentioned to me the creation of a Life Soundtrack early in the year. It’s a project he’s been embarked on himself for about five years now himself, and as he mentioned, with my ever-present hunger for the creatively-written and currently-resonant lyric within my own life, after he mentioned it, I jumped on board for 2013.
There is a constant level of revision here. Once a song made it onto the soundtrack, occasionally it did not stay there [but typically it did]. This is a running accumulation of why these choices were made–and how they fit into my present frame-of-being. I think part of this is that while I will explain my choices [because, I like transparency] . . . there’s also beauty in imagination and mystery.
So far, 2013 has certainly been eventful. Here are the tracks from 2013 thus far . . .
The Resolution – Jack’s Mannequin.“There’s a lot that I don’t know / There’s a lot that I’m still learning. / When I think I’m letting go, I find my body it’s still burning. / And you hold me down. / And you got me living in the past [. . .] / Yeah, I’m alive / But I don’t need a witness / To know that I survive / I’m not looking for forgiveness / Yeah, I just need light / I need light in the dark as I search for the resolution.” Life seldom works out as planned, but that doesn’t make it any less beautiful. These lyrics especially have spoken to me at a myriad of different points throughout the last year, especially in light of the aspects of living with the potential uncertainty of medical issues. “When I think I’m letting go / I find my body it’s still burning” often speaks to me of the reality in that when I sometimes wonder “how am I going to keep doing this?” my body just proves to me that I can do this. This song, and the preceding lyric especially, also became very important to me following my return to life after the emergency room stay.
Even If It Kills Me – Motion City Soundtrack. “But if I had a little more time to kill / I’d settle every little stupid thing / Yeah you’d think that I would. / But I’m too tired to go to sleep tonight / And I’m too weak to follow dreams tonight. / For the first time in a long time / I can say that I want to try to get better / And overcome each moment in my own way. […] I’m really not as stubborn as I seem, said the knuckle to the concrete.” I, like most people, am pretty good at denial. I am working at that–whether that includes the process of of not letting symptoms escalate before seeking help, or the culmination of my learning assessment and subsequent accommodations. I want to be healthy, but sometimes there is so much work involved in getting there that makes it difficult. It’s about taking it slow and steady, and embracing the process . . . even if it kills me along the way.
Feelin’ Good (cover) – Muse. “Freedom is mine, and you know how I feel . . . It’s a new dawn, its a new day, it’s a new life for me / And I’m feelin’ good.” There was a span of time that I allowed certain people to control my thought process, and I expended far too much energy on this–I struggled to let go of something that I had created that had become not what I had visioned and out of my control, trying to help people change who did not want to change. As soon as I was forced to let go of it . . . my life, my thought process, improved further in so many ways. And for that, I am grateful. Each day is new–and that makes me feel good.
Typical – Mutemath. “Come on can I dream for one day / There’s nothin’ that can’t be done / But how long should it take somebody / Before they can be someone. / Because I know there’s got to be another level / Somewhere closer to the other side / And I’m feeling like its now or never / Can I break the spell of the typical?” This one really spoke to me through the process of the educational assessment, I think. While it is less unheard of than one would think, there’s a lot that is atypical about being diagnosed with learning problems when slowly approaching completion of a university degree. “Because it’s dragging me down . . . / I’d like to know about when / When does it all turn around?” Now. It turns around now, with answers in my grasp. Even if that contributes to the atypicality.
Workin’ it Out – Hilary Duff. “Some days I just don’t wanna know why. / Hey, I’m not giving up, no. / I’m gonna stand up and shout it. / No way, I’m not slacking off, or backing out, or cracking up with doubt / I’m working it out.” Getting back into this one was interesting, but enjoyable. I’ve probably had a five year Hilary Duff hiatus, so when this started going through my head one day, I had to dig out Metamorphosis and put it in iTunes. In the process of any diagnosis, any aftermath of said diagnosis, there is the desire to just quit, to continue living life with the feeling that something is not right. I’ve had it through medical problems, and I’ve had it through the learning assessment. But in the end, curiosity always wins out . . . and working it out is so much better than denying what is going on.
The Year of Discovery – Tess Dunn. “I searched the whole world to find / All the missing pieces of me. / But they were already there / Not put together properly. . . […] There’s always something missing / Can’t seem to put the pieces where they belong. / But now, for once / I’m finally feeling complete. / This is my year of discovery.” The 2011/2012 school year was one of deep self-revelation and discovery, I think. However, 2012/2013 has been tumultuous, challenging and rewarding simultaneously. I am discovering who I am, and who I am becoming more and more. I am understanding more about my brain, my body, and how I alter my own world. And how that is all about not only choice . . . but choice combined with discovery . . . and altering the process I walk through every day to be the most meaningful while creating the most meaningful outcome possible.
What Doesn’t Kill You (Stronger) – Kelly Clarkson. “Bet you think that everything good is gone […] / Maybe you don’t know me / ‘Cause you’re dead wrong. / What doesn’t kill you makes you stronger / Stand a little taller […] / What doesn’t kill you makes a fighter / Footsteps even lighter.” It’s funny the timing in stumbling back into this one, which was the weekend before my overnight in the hospital, when I thought that I was getting better. Though realistically a breakup song, it applies to a lot of things . . . and a lot of things involving getting better in every way. The anemia experience was brutal . . . but I’m working at rising up stronger.
Caves – Jack’s Mannequin. There is a certain indescribable feeling finding current circumstance eloquently explained in music . . . and during my week in bed and twenty-two hours in the ER [especially those twenty-two hours], Caves was it. “I’m caught somewhere in between alive / and living a dream / No peace, just clicking machines”. For eight hours straight in the hospital, in the middle of the night, this song was honestly what got me through. “The walls caved in on me . . .” All those moments collided, from the vague tiredness to nearly passing out, to IVs and transfusions. “I lay still / Still I’m ready to fight.” The piano that just always floors me around 3:30 was just all that more beautiful at 3 AM as new blood gave me life again. “The walls fell and there I lay saved. / The walls are caving in / as far as I can see / The walls are caving in / Doors got locked for sure / There’s no one here but me.” It also speaks to the resolution after living through it . . . which was in itself much harder than I would have expected. But in everything . . . there is resolution. “I fought a war to walk a gang plank / into a life I left behind / Windows leading to the past / Think it’s time I broke some glass. / Get this history off my mind.[…] Everything’s a piece of everyone.”
I think this is a seasonal thing. Some seasons, perhaps, I may not have as many moments that prompt deep self-reflection and lyrical cerebration as much as January through mid-May have. dragging track after track into an iTunes playlist. However, I could be wrong, and this could be just the beginning. As usual, I am meeting the world with curiosity and a demand for answers . . . that may never change . . . but I am happy to know that growing happens through the challenge, and already, I know this year is going to be full of big things. Because it already has been.
On the 12th of each month, a bunch of bloggers from around the world take 12 pictures of their day and blog them. Here are my pictures for May 12th, 2013!
9:32 am – car. Iced coffee on the way to the cabin for the day.
10:22 am – beausejour subway. Subway: everybody’s got one. Getting lunch to eat at the cabin.
10:30 am – beausejour main street. How kickass is this bowling sign? Also I had a conversation with someone walking down the street while taking this because she totally takes pictures like me.
11:25 am – cabin. Pretty sure the first sight of this view for the year is one of my favourite feelings.
1:45 pm – back deck. This is my view while studying (for a class I dropped the next day. Good use of time there.)
6:12 pm – kitchen at home. I still love this water bottle I snagged from an unmanned booth at the World Congress of Asthma in Quebec. LUNGS.
7:50 pm – kitchen. My friend Dia from the GTA sent her aunt over to hand deliver some get-well gifts for me following being in the hospital, which was really sweet of BOTH of them! These cupcakes were a part of it, and amazing :].
10:39 pm – bedroom. Finished my friend Scott’s book Life is Short, Laundry is Eternal tonight. Fantastic read.
11:10 pm – kitchen. I think I basically decided to drop this course when I saw that the final exam was worth 40% and the paper was only worth 15%.
11:14 pm – kitchen. Knocked the salt/pepper shaker over as I was packing up my stuff for the next day. This happens frequently, but usually I don’t have to sweep up this much salt from the table.
11:18 pm – bathroom. At this point I was convinced that the tape from my IV was never, ever going to come off. Except my friend Steve is a smartypants [with far too much experience with the medical tape] and suggested trying acetone (i.e. nailpolish remover). Totally worked, but I didn’t try it until a day or two later.
11:25 pm – bedroom. Far too late for bed on a Sunday.
World Asthma Day was last Tuesday, and I am extremely frustrated that I missed it being in the hospital. I missed my five-year asthma-versary being sick. As for my World Asthma Day post, here it is. Late and without the buzz surrounding World Asthma Day.
But you know what? The first Tuesday in May or not, it still matters. It matters as much as it did on the day that it was created, and it will matter as much as it does until this stupid disease is cured. I feel asthma as both a blessing and a curse, but the reality is, I would probably be a different person without it–and I honestly don’t think i would be a better person without it. And I certainly would be missing a lot of amazing friends without it.
On World Asthma Day, though, at 3 AM PDT (5 AM CDT), from hospital rooms 3,035 kilometers apart in two different countries, through e-mails my friend Steve and I decreased the distance for moments at a time, as he dealt with a lot of hardcore shit at the same time as he was hospitalized yet again because of his asthma. Steve is not only the guy who is half responsible for my perspective on living with asthma being how it is, because of all he’s taught me and all he’s walked through with me . . . but because it’s when he gets sick, it’s also when I get the angriest about this stupid disease and the reality of the impact it can have on people. Yet, Steve’s story also contains a lot of positivity. As does mine.
There are echoes of conversations I’ve had with many people in this video–with Steve, with Jay, with Natasha and Elisheva and many others. And now, I’ll share them here.
Because I have the ability to change my own world. And having asthma doesn’t change that.
The guest posts will resume this week, and I am really excited to share them with everybody. Have an asthma story to share? E-mail me at kerriontheprairies [at] gmail [dot] com.
Surreal. That is the only word I can find to explain the things that have occurred over the past few days. It feels like a long expanse of time from my life is missing, however, it’s that missing expanse that I find myself living in my head over and over again. The hope is, if I get it out here . . . I can get it out of my head.
For the previous week and a half, I’d been extremely tired and not feeling well, missed a lot of work and slept way too much. Constantly being grated on about my nutritional choices didn’t help, and frustration was setting in hardcore. After over a week off work, on Monday I finally had regained enough strength to return to work after seeing my doctors on Friday morning, who, instead of repeating the same old phrases of iron-rich foods, respectively a) said she would arrange for an ultrasound and b) started me on Provera to deal with my messed up periods which are the real root of the anemia issues. We’d try that course of action for the next three weeks, and re-evaluate. I got blood drawn like I have many times, and returned home.
Monday morning (May 6th), things had continued to go on the uphill and despite a crappy night of breathing and four hours of sleep, I went to work feeling okay. I was exhausted, but I was happy to be there and went through the motions like any morning, albeit with less enthusiasm. I came to school, and while I was hanging out in the accessibility office, I read the heartbeat skipping text conversion of a message from my doctor’s assistant: “I need you to call me as soon as you can.” I slipped out of the office and down the hall, where I was told “You need to go to the emergency room right away and tell them your hemoglobin is 56–you may need a blood transfusion.” My response was to ask if I could go to class, considering I’d gone to work that morning, and after checking with the doctor, I was okayed to go to class prior to going to the ER.
I calmly returned to the accessibility office and BBMed my boss, then once my paperwork in there was done I went to my mom’s office to let her know what was going on, e-mailed my friend Steve and BBMed my friend Dia. While I went to class, my mom went back home and packed my stuff up, picked me back up at school and we went to the hospital.
I was triaged (and got a mask to wear, because I was so uninterested in getting germy sick in that ER), and the 2.5 hour wait began. I was called in, re-assessed, and stuck twice before an IV was accessed (that shit hurts. I was biting the inside of my mouth–I really thought it was not going to be a big deal but . . . wow). Blood was drawn from my other arm, and IV fluids were started. I saw the awesome Doctor Tim who complimented me on my Chucks and commented on the fact that my iPod, video camera and phone were all siting on my bed, and waited for blood to arrive–over the weekend, my hemoglobin had dropped further, to 52, while it should be over 120 . . . so while I was feeling fine, I was in pretty bad shape. My heart rate upon my first check once in my little ER room was 137–in most of my fitness labs last term, my resting heart rate was in the 70s.
Not impressed with this situation.
Eventually the nurse said that the blood should be arriving in about 20 minutes. Finally, they hooked me up, we waited the initial 15 minutes to ensure I wasn’t having any sort of reaction to it, and then my mom left for the night. Because my blood counts were so messed up, I was sick, but I was feeling totally fine and was constantly using my phone, iPod or iPad to keep myself entertained, and video blogging the hospital stay as it progressed (near the end of this post). By about 9 PM I had given up on the idea that any sort of sleep might happen between the frequent vitals checks and the old lady yelling in the room across from me. I plugged my earphones in and watched the Dear Jack documentary once again as fresh, packed red blood cells united with the ones already in my body.
Not impressed with this situation, but even after the saline alone, my nurse commented that my colour was already better.
Sometime during the first transfusion, around 11:30, I heard the nurses doing a shift change and talking about me (I was “19″ due to where I was located). Soon enough, someone crashed through my door with another bed and I got transferred out of the main ER by a couple hospital people who chose to crash through my doorway with a bed–I was just like “Just leave it there, I can walk!”. After feeling like I was in some kind of movie as they not-so-gracefully careened my bed to the back portion of the ER, I found myself in a much better room in a quieter back area, still my own room with my own bathroom, which I was happy about.
Eventually, the last bit of the blood was run through with more saline, and sometime soon after I was given a shot of Lasix through the IV, left on the saline for awhile, and told to rest. Hahaha, funny joke nurses! Reality: there is no rest on Lasix (a diuretic), and when the nurses say “This will make you pee” is the understatement of the year. Within about five minutes of the first dose, I was, I swear, going to the bathroom every five or ten minutes (I was like “REALLY what is the point of giving me IV fluids if you are simultaneously just making me pee it all out?!”). I think my nurse was actually slightly amused. Eventually the nurses came in again and started the second bag of blood (which is this big important production involving turning the bright light on because one of them has to stand there holding my arm and reading all of the information off of my bracelet to the other nurse reading the matching information off of the bag of blood).
Throughout much of the time I spent in these hospital beds, I played the same three things on my iPod:
Caves – Jack’s Mannequin [for about eight hours straight]:
“No peace / just clicking machines […] the walls caved in on me.”
“I lay still, still I’m ready to fight”
“The walls are caving in / Doors got locked for sure / There’s no one here but me . . .”
“I fought a war to walk a gangplank / into a life I left behind / windows leading to the past / think it’s time I broke some glass / Get this history off my mind.”
But really, it is all about the piano–you’ll know the part I’m talking about.
Diane the Skyscraper – Jack’s Mannequin:
“But I don’t have the energy / So she plugs my machines back in . . .”
“And the late night TV talks to me, bout God, but God why can’t I sleep / As she plugs my machines back in.”
“I’d be lying if I said this was my plan / but we are all in this together / See I’m trying but I just don’t understand / Why I can’t predict the weather past the storm.”
“And I feel like I’m a battle tank / But there’s peace for every pound of strength.”
and the Matthew Good album Hospital Music.
Sometime around 2 AM the night shift ER doctor came and talked to me, and was a total sweetheart. She told me she was going to refer me to hematology (outpatients) to do testing to rule out a bleeding disorder (like Von Willebrands), and sat down on my bed and told me about how she has two kids with hemophilia. Really, if a doctor is going to come visit at 2 AM, it helps if they are personable–though I only saw her for a few minutes, she was fantastic.
Between the vitals every half hour and the next shot of Lasix (I tried to argue with them on it–”I don’t want that again. You told me to rest and I just ended up going to the bathroom every five minutes, how is that even productive?”), sleep was non-existent. Even more-so when at 4 AM old-man-next-door was yelling about his rain gauge and getting angry with the nurses. Somewhere after 4:45 AM, the nurse came in to do vitals and took the SAT probe away from me because apparently she didn’t like me playing with it. Also sometime around here I also caused an “upstream occlusion” in my IV by getting tangled in the power cord (serves them right for giving me the Lasix :]).
The early hours of the morning . . . 4:19 / 4:45 AM
The third and final bag of blood was started sometime in the early morning hours, and when it was finished I actually got unhooked from my IV for a bit–pretty soon after this, my morning nurse, Spencer, came to give me another shot of Lasix, and I told him “My arms are free now, let’s have a dance party instead of the Lasix, okay?” (He didn’t oblige, by the way, and I swear they have a script because he was just like “This will make you pee”, and I was like “Understatement of the year, my friend.” The first dose was the worst, but I still was going to the bathroom like every twenty minutes on the subsequent doses, which was still ridiculous but not as ridiculous. Granted, I was just happy not to be stuck to the pole anymore, because that thing had shitty wheels and made everything so much more confusing.
I actually don’t hate this picture, because I actually look fairly healthy in it. Also i was happy because I was untethered.
I thought once I’d gotten unhooked and shot up with Lasix one final time that I was free. I honestly did. My last heart rate that I’d asked about was 94 and I was like “Oh good, look, time to go home.” The lab came and drew blood . . . and then Spencer re-appeared and hooked me back up again! Needless to say, I wasn’t impressed.
Soon enough another doctor came in to tell me my hemoglobin was up to 113, that I just needed to ensure I kept my appointment with my gynaecologist on May 22nd and keep taking my iron pills, and I could go home. Spencer came back and unhooked me from the saline and pulled my IV and I was free to go.
While my hospitalization wasn’t in the least torturous, and full of really good people taking care of me, it should have never had to happen to begin with. I’ve been expressing concerns to my family doctor for a year and continually requesting regular hemoglobin draws, and those values have been having ups and downs, even when I was compliant with treatment. The purpose of having a doctor is so they assist you to make the right decisions about how to deal with what is going on in your body . . . not simply facilitate the making of requests. The big issue finally came, obviously, within the last couple weeks, when between April 12th and May 3rd my hemoglobin dropped from 8.3 (up from 6.something) to 5.8. It should have never had the chance considering I was seeing my doctor almost monthly to get to the point where I could barely get out of bed for five days, and it should not have taken a week to see my doctors after the fact–I am still angry about that. If you know me, you will know that I am all about self-advocacy, but the reality is, in order to put up a fight . . . it is imperative to be moderately healthy–you have to have the energy to fight. Denial is a typical and important yet also potentially detrimental coping mechanism, and I’ve experienced that deeply in this experience–I am okay, it’s not that bad. I spent an entire weekend telling my mom that I didn’t need to go to the hospital when I couldn’t even get out of bed without my head hurting. Denial is easier than feeling all kinds of the crazy things it’s possible to feel when you’re sick . . . because it’s less emotionally draining when your body and mind are already exhausted.
There came a point, which I didn’t realize until I got home from the hospital, where I simply went on emotional autopilot simply just to keep surviving, and really, it felt a lot better when I started feeling things properly again. And I think that came with the return to energy, too. Because for way too long, I’ve been coasting. I’ve been trying to survive and my body wasn’t healthy–yet, I was trying but without the right tools. Which is futile. Regrets are futile, also, however–I’ve learned that if this ever, God forbid, happens again that I’ll go to the hospital when things start getting bad and not lose a week over my life . . . 22 hours was quite enough, but I’m back to where I should be . . . and working at getting better everyday.
I was blessed this week by the words and support of dozens upon dozens of my friends both near and far, and I am so thankful for these people–sharing their stories, and sending me e-mails, texts, tweets and Facebook messages continuously in the hours during and following my time in the hospital. Those things made the length of the days and nights both at home and in the ER more tolerable. That support means everything, and to everyone who reached out at all hours, I am beyond grateful for your support.
But more than that, I was for the second time in my life blessed by the gifts of people who I will never be able to thank, for helping to make me healthy by choosing to donate blood. I received a transfusion early in my life as a premie, and donated blood once in high school–I very much hope that I can stay healthy enough to be able to donate blood again soon. The irony is, I had a blood donation appointment booked for May 2nd that I couldn’t attend, and days later I was on the receiving end. To all of you who donate blood regularly: thank you. I cannot convey my thankfulness enough, nor can I express to you the awe I feel in the fact that I feel so healthy now. Thank you.
There are additional points of irony in this story. Monday when I was at work (fully believing I was perfectly healthy) my boss told me I looked like I’d lost weight (which I figured was just one of those things people tell you when you’ve been sick a week and thought nothing of it). I walked out of work and tweeted this Jack’s Mannequin lyric “She thinks I’m much too thin / She asks me if I’m sick“, and thought nothing about it–I tweet lyrics all the time (it turns out I have lost fifteen pounds, which is crazy, but since I never weigh myself I don’t know the timespan that occurred within).
The real irony comes in two places, the first the obvious that I was still super sick. The second piece of irony is, the album that song is on, Everything in Transit, culminated recording the same day lead singer Andrew McMahon was hospitalized for anemia then diagnosed with leukemia–the album has all kinds of random hospital/doctor references that were really foreshadowing to what would happen next in Andrew’s story (later on, the album ended up coming out the day he got a bone marrow transplant)–my tweeting of his lyric foreshadowed the next 24 hours in a similar way as his own story was foreshadowed by the album, which is really surreal.
In the darkness, blessings, however, shine through. And two things remain in everything: perseverance and hope.
And, the story continues . . . and I am very thankful that it does . . .
“When I think I’m letting go, I find my body it’s still burning
[…] I need light in the dark as I search for the resolution.”
My friend Elisheva is now on her third guest post on blogs I’ve written in the past, and her second here on Kerri on the Prairies! Elisheva and I connected several years ago because of our asthma, and I think she is my furthest-distance long distance friend, living in Jerusalem, Israel. Aside from being able to talk about our asthma, I love how much I learn about not only Israel, but the rest of the world from knowing her, as well as simply seeing how she has progressed through a variety of different life stages in the three-and-a-half (or more?) years since we’ve known one another! And a fun fact . . . Elisheva is also known for hosting World Asthma Day (WAD) parties, something I think is extremely cool–thanks for guest posting again, Elisheva!
Kerri asked me to do a WAD themed guest post. And I love Kerri’s blog, so how could I say no?
I first heard of WAD… uh… maybe 6-7 years ago from a friend who loves checking what special day each day is – cuz every day is something if you check. Said friend is asthmatic too (tho since she’s been an adult, it’s become much more mild and she only needs the occasional Ventolin – lucky! Although she also has deathly food allergies – not so lucky.), so we organized a party. And since then, every year we’ve had a party. This friend had a baby a couple of months ago and I’ve been busy with my own stuff (I just got back from a week in the Czech Republic – Fun!), so I think this year won’t be that exciting – tho there will definitely be some sort of party! You can read about the one from 2011here (from back when I blogged). Was pretty rockin’.
So… WAD. I love WAD. I love this time of year because the weather is generally nice and there are a whole slew of Jewish and Israeli holidays that are my favorites and also there’s Eurovision and Britain’s Got Talent. (I’m easy to please.) But WAD is great because on that day, asthma isn’t something that makes me weird and different – it’s something that makes me special. And while it’s supposed to be about awareness, I just celebrate it. Get together with friends who have also been on inhalers their whole lives or most of their lives or only recently or not at all and eat food and play games. I love food. And games. I still have to come up with one by Tuesday. Hm…
I actually have a lot of asthmatics in my life. I tend to attract them for some reason. And I come from a family of crappy lung gened people. My mom, my brothers, my aunt and several of my cousins are asthmatic too. In terms of living with it and in terms of WAD, it’s all about how you look at it, I think. I keep inviting my brothers to WAD. Every year. One (asthmatic since age 16 or so) lives in the US now, so he can’t come, but he likes the idea. The other (asthmatic since birth) thinks it’s lame and that I’m weird and keeps asking me why he should celebrate his lung disease. I tell him (and anyone else who asks) that’s it’s not celebrating the disease itself. First off, I love parties. Any opportunity for a party is great. I also love WAD because it’s turning something negative about me and making it almost positive. Hanging out with other people who know what it’s like and share my experiences and who can make fun of it with me. And eat food. And play games. Yay WAD!
Kerri marked her fifth asthmaversary last week. I have no clue when mine is — just that it was at some point during fifth or sixth grade. In Jewish culture, all trees have the same birthday – 15 Shvat. Doesn’t matter when in the year you planted your tree. On that date, all trees become a year older. I hear in some cultures it’s like that for people too. So I figure WAD is as good a time as any to be a collective asthmaversary for people who have no clue when theirs is, eh? And on my fake/alternative/replacement/tiny-chance-that-it’s-actually-real asthmaversary, I’m gonna get all reflective. Cuz that’s what birthdays and anniversaries, etc are supposed to be for, right? Reflecting.
I’ve always wondered how life would be if various factors were different. What if I was born male? What if I lived a hundred years ago? What if I wasn’t Jewish/Israeli? (That’s a pretty open one. Cuz then, what would I be instead? There are a billion alternatives.) For many of those I conclude that I just wouldn’t be me in those situations. My identity is built so strongly into those details of my life that if they changed, my experiences and beliefs and outlook on the world would be so different, I just wouldn’t be me. What if I wasn’t asthmatic? Then provided the rest of my life was the same and that was the only difference, I’d definitely still be me. In this alternate reality, no one in my family would be asthmatic (since I’d already seen plenty of asthma before my own diagnosis) and we wouldn’t have any other chronic thing instead.
Okay, let’s run with this. If I wasn’t asthmatic:
I’d likely smoke hookah/nargila socially. I drink socially. And in the Middle East, drinking socially generally goes with sharing a hookah. I personally love the smell of hookah and honestly believe that smoking one a few times a year really is fine – if you have healthy lungs. I believe that cigarettes are disgusting. But so is drinking all the time. Every time I get a whiff of nargila, I tell whoever I’m with that if I wasn’t asthmatic, I’d definitely smoke one. Then again, this is all theoretical being as I was diagnosed as asthmatic years before I was ever offered a smoke.
I’d probably be more of a bum in terms of physical fitness. I exercise 1-3 times a week when many of my friends don’t exercise at all. I occasionally use asthma as an excuse to get people to join me (“I have an incurable lung disease and pump drugs into my body to breathe normally and more to exercise. And I still do _____.”) But most of my friends have either brushed me off as crazy or tell me I do it BECAUSE of the incurable lung disease. Because I feel the need to prove myself. I think there’s some truth in that second group of people.
I’d be less compassionate and understanding than I am now. That’s something my friends really like about me and tell me pretty often. I have several friends who have more severe/debilitating/life altering diseases than I do, and I adapt to their needs and treat them as normal without thinking twice. As healthy as I am – and I am lucky and am able to have my health under control and feel pretty normal a lot of the time – I do know what it’s like when walking down the hall to the bathroom feels like running a marathon. And even on a day-to-day basis when I’m feeling fine, I know what it’s like to monitor your health and take meds when your friends don’t. (I’d say I don’t take breathing and good health for granted, but I mostly do. I’m spoiled by modern medicine. Which is why whenever my breathing craps up for days or weeks and actually disables me in any way, I turn into a huge baby and feel sorry for myself, because I’m used to doing the treatments and actually having them work and feel betrayed. But whatever. I know what it’s like to not have your body do what you want it to do. It sucks.)
I probably wouldn’t have a primary care doctor. I hate going to the doctor so freaking much — It’s not normal. So much that when I was a kid I had high blood pressure every time I got it checked and the doctor eventually sent me to have my heart checked out – it was fine. Turns out I have perfect blood pressure and it only goes up around doctors. Having lung issues for most of my life has made it necessary that I see a doctor occasionally – to keep tabs on my breathing and to make sure I have a steady stream of prescriptions coming my way, but I STILL can’t stand going. Every time I have an appointment, I spend the entire 24 hours beforehand dreading it. If I didn’t have something I need to keep going back for, I’d probably never go, and when I did, it would be to whoever happened to be there and could see me that day. Which is what a lot of my “healthy” friends do. Lung specialist? Hah. I hate that even more. I only end up there every few years when my GP nags me that it’s been a while and I should really get pulmonary function testing done.
I could probably run/swim/do any and all physical activity much better than I can now. Provided I worked at it as much as I do now. I’ve given up believing I can run and swim like everyone else. Zumba yes, but running and swimming are just too hard for me and will always continue to be hard. I still do them, but I don’t think any amount of any asthma drug can get me on par with everyone else. Perhaps if the water wasn’t chlorinated or if running had breaks…
I could freaking clean my house properly without coughing and without extra drugs. Then again, I could do anything and everything without any inhalers at all. Ever. I can’t even imagine that.
Also I wonder what long term effects asthma and its treatment have had on my body. As far as I know, I don’t have any permanent lung damage. I wonder if my body would be any different if it didn’t have ~16 years of asthma drugs pumped into it. A friend of mine is a massage therapist and last week she was working on me and pointed out that in most people (i.e. anyone she’s ever worked on before), she couldn’t feel their accessory breathing muscles in their neck – which are really only used when someone is struggling to breathe. In me, they were totally buff. So I guess I wouldn’t have those.
I wouldn’t celebrate WAD and I wouldn’t be writing this. I wouldn’t know Kerri or anyone else I have met and become friends with because of having this in common with them.
I dunno. I don’t think my life would be that hugely different. As far as I’m concerned I lead a pretty normal life. The things on this list aren’t that huge in the grand scheme of things, yet they define a significant part of who I am. Being asthmatic, doing the right drugs at the right times, taking the precautions, going through the motions are so ingrained in me that I take them for granted. Hence when people feel sorry for me, I can’t stand it, cuz my life doesn’t suck. But if there was a cure in my lifetime, it would take some getting used to. (Though wayyyy easier to get used to than if I woke up male or Mexican or in the 19th century…) I mean it would be awesome. But life with no inhalers? No getting out of breath or coughing ever? Hah, what?
May is Asthma Awareness Month, and World Asthma Day is this coming Tuesday. This month, I am hoping to CHANGE as many perspectives on asthma as possible . . . by SHARING as many perspectives on asthma as possible! I am blessed to have many people in my world sharing in the asthma journey with me, who are also willing to contribute their own stories over the coming month.
I am excited to introduce you to my friend Rona, an occupational therapist living in Chicago. Among the very first of my “online friends” I met offline, I was lucky to be able to meet her for dinner back in August 2011 during a whirlwind trip through the Windy City. Rona is such a sweet and compassionate person, and I am lucky to be able to share part of her story of HOPE today. Thanks, Rona!
I was diagnosed with severe persistent asthma in August of 2007 at the age of 52. After a lifetime of seasonal environmental allergies, bronchitis, and pneumonia, my lungs never really were very happy. I lived in three different areas of the United States, but ended up coming back to Midwest America for many reasons. As it turned out, my lungs absolutely rejoiced here in Chicago, a large industrial city. Living far from the industrial side of the city, the air is relatively clean here.
I went through all of the stages of anyone else with any chronic illness. Denial that this could actually be happening to me progressing to truly accepting that I do. I embrace the fact that it is part of me, but it does not define me.
If you should meet me, you might notice the effects of prednisone on my form, but other than that, you don’t see asthma. Back in 2007, you may have. This visual change, this lack of shortness of breath, is what has enabled me to move on with life. Without saying, my less than loved rescue inhaler is an external hard drive for my lungs. Always plugged into my pocket.
Armed with many drugs consumed and breathed daily, I still suffer with exacerbations every 2-4 months, depending on unintended exposures to my numerous triggers. Still, those in-between moments are wonderful. I never could have believed that I could have a full life and have severe asthma. As I danced at both of my daughters’ weddings this last Fall, this is testament to my lungs playing a minor role in my life. I write this to thank the doctors that nursed me back to health, regulated my recovery and always encouraged me to follow their multi-lined detailed “asthma action plans”. I owe them my life, to be sure.
With this said, I know not all of us have the same quality of life. There are many worse and many better than I, however one thing is for certain: Life goes on and each breath is hope for yet another one. Let all of us take a moment to look forward and hope for a better tomorrow for the very young and the very old all suffering from asthma worldwide.
I’d like to take this opportunity to add my two cents as someone who has experienced asthma. I, and so many others, know its impact on family, career, community, and the world. It is time to continue to do more than limit exposure to the triggers. What else can we do? Looking to the researchers and the funders of this research to lead the way to the answers. There are just too many suffering from this. We need to look at education of both those bearing the burden and those in our communities who don’t understand, to take them and walk with them until they do.
Finally, I thank you “asthma” for joining me in my walk down my own path of life. It’s been interesting, hasn’t it? Although you took my furry pets, my dust-ridden stuffed animals, my spontaneity and many of my life’s choices, you have taught me persistence, and for that, I respect you. Now leave me alone, will ya? <3
I’ve had a really hard week, both physically and emotionally. While I’ve had anemia caused by iron-deficiciency for over a year, it has never, ever, kicked my ass as thoroughly as it has this past week. And in reality, it snuck up on me. I knew I was feeling more tired; I knew I was having more problems keeping up to my life. But it very, very quickly spiralled into something I had never experienced–an unignorable feeling of exhaustion, of tiredness, and ultimately it has let me, for the better part of the last week, unable to function.
I would not be surprised if other nutritionally-based deficiencies were able to kick peoples’ asses the same way that my iron-deficiency kicked mine. The problem with nutritional deficiencies, though, are that people automatically perceive that you are not eating properly. I have to be extremely clear here: I am in no way a vegetarian nutrition superstar, and I am NOT solely trying to defend myself. I know that I do not always make the best choices. But even if you see somebody’s nutritional choices for one hour, one day, or one weekend, you are not getting the whole story of what is going on in their overall life–or in their body.
Last Thursday, I hadn’t been feeling well–well, nor had I been as of Tuesday of last week, either. I was extremely tired, but for the most part was pushing through. Maybe I took a nap when I got home from work in the morning, and maybe I didn’t feel quite right, but I was functioning. It had happened before, and I assumed that eventually things would balance out as had happened before. I kept taking three iron supplement pills a day as I had been for the past six-plus weeks consecutively, and figured that I’d catch up on sleep over the next weekend, and that I was feeling run-down from spending the past weekend in the US with my coworkers. I got home from work before 10:30 that morning after a typical 7:30-9 shift, took a nap for an hour, and felt okay. Not great, but okay. A couple hours later, though, I was feeling much worse and made the difficult choice to ask my boss if they were able to cover me for the afternoon.
And thank God I did, because by 6:20 on Thursday night, I experienced some intense dizziness while doing dishes, and for some reason wandered into the bathroom. Where I nearly passed out and pulled a towel rack out of the wall in the process. In a flurry of dizziness, I stumbled from the bathroom to my bed where I spent the next nearly five days. I realize now that it is completely possible if I had pushed myself and gone to work when I wasn’t feeling right, I could have crashed at work.
I’ve slowly been recovering. Very slowly. I spent nearly five straight days in bed. Yesterday, I spent about eight hours simply sitting at my kitchen table on my laptop, and I was exhausted. I have never experienced tiredness like this, and the feeling of slowly coming back from a place where my body had become extremely depleted, of not only iron but potentially of blood. We’ve been in contact with my primary care doctor and my gynaecologist, both of whom I see tomorrow. I am working really hard at timing the consumption of my iron supplements better with added vitamin C, like I have tried previously, I am working at increasing the iron in foods I am eating . . . I am trying.
My diet may not be stellar. But it is only part of the story. And it is seemingly the only part of the story that people seem to want to pay attention to.
Because it has a simple solution. Because I can make the choice to modify that part. Because it is easy to lay blame.
I have spent a year beating myself up over this thing. About how my hemoglobin keeps dropping despite the fact that I’m taking the pills that frequently make me feel sick, that I am trying to modify other choices I am making. But the reality is, is if my body can’t keep up with the iron that it is losing, it is never going to be able to replace it regardless of how hard I try.
Regardless of how much I blame myself. How much I blame myself for not trying hard enough. How much I blame myself for not being more proactive in my medical care earlier. How much I blame myself for what has happened this past week.
Because it is easier to blame myself for everything, than it is to accept that I don’t have control over 50% of the problem. Because with any chronic disease, lack of control over the situation is half the emotional battle.
When you’re feeling physically exhausted, it is much easier to blame yourself and experience all the associated anger, guilt, frustration and sadness all that more deeply.
And it is much easier to lay that blame on yourself . . . when others are laying it on you too. When they’re lecturing you about how wrong you’ve been in the choices you’ve been making for yourself. And when it’s coming at you from all sides: family, friends, coworkers–people who are trying to be well-meaning, but are the ones who are completely contributing physical, emotional and spiritual burnout unintentionally.
I am already blaming myself. I do not need another lecture or a reminder that maybe I’ve fucked up.
And neither does anybody else with symptomatic iron-deficiency, or any other sort of nutritional deficiency or medical condition–yet many of us experience it too frequently.
I’ve experienced too many full on lectures or related comments from well-meaning people this last week. People who I love deeply, who I know are just trying to help me be healthy. But you know what? When my body is already feeling like shit, that means my mind is already feeling like shit: a lecture is not helping. What does help?
The support of my friends. I love all of the people in my world. But like most things, once the first couple days pass of being sick from whatever cause, people fade out. If you want to help, stick around–even if we are not too interesting laying in bed, we really do appreciate that you are taking the time to simply be there for us.
Being supportive doesn’t mean giving me a lecture on how to manage my health–you are not in my body, and you are not my doctor or dietitian. It can be as simple as talking to me about something completely unrelated to distract me from how I’m feeling, or shooting me a quick text. Or posting something goofy to my Facebook or tweeting at me. Or learning alongside me–it is so simple, but my friend Steve simply asked me “What foods in a vegetarian diet are rich in iron?”–not only was this in no way judging or condescending, it showed that he cared enough to want to learn more.
Support doesn’t have an agenda. Neither does friendship or love.
Note: This post is not aimed at anybody in particular. Its more about the force of accumulation.